The Results are in --- FISH test & 2nd Opinion

Well, the day started out pretty crappy b/c right before we walked out the door for the pc appt we got a call from our regular pc. . . the FISH test came back positive. I was not surprised and was pretty well prepared for that, since Brayden Boy doesn't seem to get many breaks these days. One more thing to worry about, I guess. We'll be making an appt with a geneticist (sp?) to find out what to do next -- probably some more torturous testing for the poor little guy. For those of you who don't know what the FISH test is, go ahead and search for DiGeorge Syndrome or 22q11 deletion. . . I've got lots more research to do myself.

Now, on to the pc appt. We had a good and lengthy talk with the dr. We all agree that Brayden is doing amazingly well. At first, he said that we would need to wait until after the TB treatment was over -- obviously if he had active TB we wouldn't want to put him on by-pass and have the infection spread throughout his body. But once I explained that Brayden had a clear chest x-ray and that he had the BCG at 3-months, we came up with a new game plan. He was shocked to hear that Brayden had the BCG (guess it didn't sink in at the beginning when I told him that Brayden was born in Guatemala), and he said "that changes everything." So, we are going to an Infectious Disease specialist to make *double* sure that the TB is inactive. If the ID guy clears him, we are moving forward with surgery right away. At Brayden's age and size, there is no benefit to waiting. . . the mortality rate is the same for a 1 year old as it is for a 2 year old. He even said that some surgeons think it is higher for the 2 year old, since the heart is having to work harder to compensate for the ToF right now. FINALLY -- a dr backs-up my gut feeling about all of this. Also, on a good note, the dr said that Brayden's PAs are well developed and that he was confident that any surgeon could do this repair -- then he said, "I could even do it . . . maybe". I told him that we weren't going to accept any maybes, and that we would go where ever we needed to. He gave us the name of 3 surgeons that he advised we get consultations from -- one at UK, one at Cincinnati, and one at Columbus. My gut says we're not going to UK, but I'll talk to the guy anyway. Everyone tells me that we will know the right surgeon when we talk to them, so hopefully this will be an easy decision.

So now, we've got to get cleared by the ID guy, get consultations from a few surgeons, pick one, and schedule this surgery -- oh, yeah, the pediatrician recommends that we avoid RSV season if at all possible since Brayden is at high-risk. That means, we need to get the surgery in before November. . . I guess we will see. . .